Last month Mo gave us a vivid account of the day he went into hospital for his liver transplant . Here he recalls his experience post-surgery and shares the impatience of an eight year old boy keen to get back to the outside world!
I woke up feeling tired and dizzy, tried to open my eyes but couldn’t. My whole body felt very heavy. I was stiff, my mouth was dry. There was so much noise, my head was pounding. I tried to speak but there was some object in my mouth!
I can’t remember when I could hear my parents calling my name. With great effort I opened my eyes and saw my parents looking at me crying and smiling at the same time. Dad was saying something, I couldn’t quite make out the words. I tried to call his name, but no sound came out!
What happened? Why could I not hear my voice? Alarm! Panic! I stared at my parents wide eyed in shock! They seemed to understand. Dad said, “It’s okay son you will get your voice back, the doctors just need to remove this pipe from your mouth”.
Phew what a relief to hear that! I was beginning to think I had lost the ability to speak! There was a white plastic sheet on my liver area. The area was tender because the liver needed time to adjust to my body, it was larger than my liver. The liver had been donated by a kind family; it had been halved. I was given one half, and the other half was given to a patient in the adult unit. Several days later the surgeon sealed my liver area as the liver size had reduced to adjust to my body.
I had to stay at the hospital intensive care unit. That was the protocol for patients post procedure. At the intensive care unit, I was allocated a nurse to monitor me around the clock. One nurse would work 12 hours then another would come for the next 12 hours. During this time, I was strapped to so many machines, monitoring everything – Big Brother style! The doctors would carry out two rounds, one in the morning and one later in the day.
I was given my meds regularly; blood was taken routinely. Intensive care is exactly that INTENSE! It was very busy all the time. So many noisy machines, patients, staff, distressed family members. I just wanted to be in a quiet place, preferably in my own room!
One day my nurse asked if I wanted to be moved into a quiet corner of the ICU. I thought ‘Oh finally yes please!’ I was so tired but relieved to be moving from the ICU centre stage. Later that day mum asked if I wanted to watch a movie. In reality I wanted to walk around but didn’t have the strength and was still attached to too many machines so I thought yes may as well watch something….
Guess what I ended up watching? Aladdin!
Over the next few days, I got to play FIFA on PS4 –this was the time I was introduced to football!
I was becoming quite frustrated with being confined to the bed, some days I just wanted to get out of bed and walk. I missed my family, friends, home and my room. I fell asleep and woke up to my parents laughing and telling me “Santa Claus” was here to see you, but you were fast asleep! I thought they were saying that just to humour me. But surely enough they showed me a photo of Santa Claus posing next to my bed!
That cheered me up a little bit, I noticed the odd bit of tinsel and decorations were being put in the ward. Christmas was fast approaching, no chance of me being at home for Christmas though. Just as I was thinking about this there was a sudden appearance of someone beside me. As I turned around to look at who it was, I was dumbfounded it was Iron Man!
My childhood hero! I was so thrilled to see him (remember I was only eight years old). He stayed a few minutes chatting with me before going to speak to the other children. That really lifted my mood. I even had a photo taken with him.
The following day my consultant told my parents that I would be moved to Ward 8 on Christmas Day. “Yippee!” I thought. It was great finally moving out of intensive care, everything smelt so clinical, like antiseptic cream or even Dettol. Ideally, I wanted to go home but knew that was not going to happen anytime soon. I was pleased to be going to another part of the hospital, hopefully it might be a little quieter. I was wondering if the food would be nicer than the soggy soft food I was given daily at intensive care! It’s strange that, before my procedure I always wanted soft food but now it seems that I wanted to try something different. Ideally, I wanted to go home.
On Christmas Eve Mum started to pack my things to take to Ward 8 and told me to rest. Everyone was in good spirits wishing each other a Happy Christmas. I eventually dozed off, after watching a few episodes of Robin Hood. In the morning, I woke up surrounded by presents. Well, that was unexpected, I didn’t think I would get any presents in hospital. Then I remembered Santa appeared at the hospital so Santa’s helpers would have taken charge of delivering the presents! There were presents for all the sick children in intensive care!
Such a great memory on my last day at intensive care, we thanked all the staff for looking after us and waited patiently for the staff from Ward 8 to come to collect us
When the nurse came to collect us, I was still in my hospital bed with all my equipment. The nurse told my parents that they would still monitor me in Ward 8 but not as often as in intensive care. Oh, great I thought, so I will still be under surveillance all the time, no escape from Big Brother!
On arrival I was pleasantly surprised with Christmas decorations, lots of colourful tinsel, baubles and even a medium-sized blue Christmas tree in the corner of the ward.
The nurse pushed my bed towards one corner of the ward. She told me that” as patients improve gradually, they move towards the far door- the exit door”. In other words, the door to freedom! In my head I thought so that door is my goal…
That evening after I had settled in, a couple of nurses came with packages. As they drew near, I realized they were carrying presents. Both nurses smiled and gave me the packages with a “Merry Christmas”. I was so surprised and shocked. So many presents, I thanked them and tried to unpack my packages. I was very tired, so much upheaval on that day, but I was so overwhelmed with all the kindness from the hospital staff. What a memorable day that was!
The second day that I was at Ward 8. I didn’t quite feel very well, I felt my stomach was starting to bloat. The nurse called the consultant to come and have a little look. After observing my stomach, the consultant spoke to my mum and told her that due to the new liver size my stomach had been squashed. Therefore, the liquid feed I was being given through my NG (naso-gatric) tube wasn’t being absorbed into my stomach. Therefore, the consultant suggested I have an NG tube inserted into the duodenum (the first part of the small intestine). This would ensure that the liquid feed would go directly into the duodenum and provide me with appropriate calories and nourishment.
Later that afternoon a nurse came to take me to the X-ray department. A doctor was waiting insert the NG tube. I was wheeled into the X-ray department and told to stand. The doctor said he would insert the NG tube and monitor the insertion on the X-ray screen. I was told to stay completely still so that it could be inserted into the correct area. My mum kept me distracted while the doctor inserted the tube.
This was a totally new experience for me because the last time I had an NG tube inserted; I was unconscious during my liver transplant. I didn’t know what it felt like. However, this time I was awake; it was a very strange sensation. The doctor told me to keep breathing deeply and to try to keep nice and still. But it was a very difficult thing to do especially when somebody is pushing something into your nose, and it is reaching down into your stomach! The process went like this for me; first, the doctor inserted an NG tube into my nose. It felt tingly and made me feel sickly, that’s why mum kept me distracted! The tube goes through one nostril and travels all the way down to the stomach so…. yeah!
After what seemed like an eternity. It was over thankfully. I was able to sit down and relax. I was waiting for the doctor to remove the other NG tube that was already in my left nostril. However, he told me that I had to keep both tubes in my nose. OH, I was quite horrified at that! It was difficult to breathe with the two tubes in both of my nostrils. But then I resigned myself to the idea as I had no choice but to follow the instructions. So, I developed a new way of breathing and that was just breathing through my mouth all the time! My voice became quite squeaky. This made my mum giggle whenever I spoke, and she started to call me Squeaky!
Gradually my stomach and duodenum started to absorb the milk feed. I started to gain a little bit of weight every day. I was continuously frustrated about being confined in the hospital. I cherished the idea of being outside, breathing fresh air. To be able to play in a park, kick a ball. However, I could see that it wasn’t going to be happening very soon. At times I would get very annoyed and become quite cross especially with my mum and sometimes with my dad.
We developed a routine within the hospital. Mum would stay with me most of the day from mornings when the consultants would come around until late in the evening. Later in the afternoon Dad would join us and then we would spend the afternoon and evening together. At night-time mum would go to stay at the hotel. I would sit with my dad, and we would watch programs on the iPad. Sometimes dad and I would chat about things and eventually I would fall asleep holding my dad’s hand. This was our daily routine. In a way, we would try to find as much comfort in each other’s company. But at times, it was very frustrating for me not to be able to leave the hospital.
On one of the days, dad came in and gave me a box to open. It was a present. I became a little excited and started to open it. I started taking the items out, of the box, they were the characters from the Simpsons family. I took out Marge and Marge fell over because obviously she has a very large blue head. When she fell over, I started to giggle then I laughed out loud! Mum stopped in her tracks. She looked at me and said. “After so many weeks this is the first time I’ve heard you laugh. It’s such a lovely sound”. And then she gave me a big cuddle and kiss. I was astonished; I hadn’t realized that I had stopped laughing, or smiling. I was just so annoyed and frustrated all the time!
Dad passed me another bag. It contained Kevin from Despicable Me. I was overjoyed with this gift. Kevin was one of my favorite minion characters. He was a very practical toy, I used to rest my arm on Kevin, so my arm did not weigh down on my liver area. Kevin became my constant companion in hospital!
As the days passed in the hospital. I started to gain weight; this pleased the doctors. So, it was decided I was to have one NG tube removed! The one that reached into the duodenum was removed as my stomach could absorb the liquid feed now. The nurse asked me to blow bubbles into a glass and she quickly pulled out the tube! That felt so good as I was able to breathe through one nostril again.
I asked one of the doctors when I would be able to leave Ward 8. He chuckled and said to me,” You need to become stronger, before escaping!” I was still very insistent and asked if I could go out of Ward 8, but still be in the hospital. Luckily he very kindly allowed me to do this. He asked me where I was going to go and I replied that I wanted to go to the hospital shop downstairs to pick up a few magazines, and some snacks. The doctor started to laugh and said enjoy your trip! I had to go in the wheelchair because I was still not strong enough to walk very far unaided. I was overjoyed to be able to escape from Ward 8 for even 15-20 minutes.
One of the physiotherapists used to come every day to take me for some exercises. I used to go in a wheelchair. My physiotherapy involved many exercises and rolling on a big ball. I found this very uncomfortable to begin with, it used to hurt my new liver area. But I continued the physiotherapy daily. Bit by bit I started to feel a little bit stronger. Then one day I surprised my parents by coming back, pushing the wheelchair instead of sitting and being pushed. This was a remarkable day for me, and my parents were overjoyed with my progress.
In the evenings. I still had to use bubble therapy (blowing bubbles into a straw). This was to help move some fluid which was trapped in between the gap of my new liver and my lungs. I was told that the fluid would only move if I exercised and if I continued with the bubble therapy. The breathing exercises would entail me wearing an oxygen mask. This would open my airways and improve my breathing. I used to use a nebulizer to help me breathe in the early days after my transplant. The mask and nebulizer made me feel like a superhero! It felt cool when I would wear it because I would imagine I was Iron Man from the Avengers or Scorpion from Mortal Kombat. I had to wear the mask for 10 minutes during the daytime and another 10 minutes before bedtime. After all the exercises my appetite started to increase.
The catering staff came around and gave me a menu, so I was able to select my meals. This was quite a novel idea, there was a lot of choice available in the form of fruit, soups, sandwiches, hot meals and yogurts, etc. So, I made my food selection daily. I chose tomato soup as my starter everyday as it was easy for me to eat. I wouldn’t really eat that much but the doctor told me ‘If you would like to leave the hospital you need to finish your food so you can become healthy and strong!’ So I took this advice on board and thankfully I was eventually moving closer and closer to that door.
One day my favorite nurse came and asked me if I wanted my hair washed. I thought, that’s an excellent idea! I couldn’t remember being washed or given a shower since I arrived in hospital! But how would it get washed? My nurse told me not to worry, that she would sort something out for me. So, she bought a silver foiled cap and informed me it contained shampoo and conditioner. I didn’t need to go into the bathroom, so she only needed to put the cap on my head to wash my hair. It would cleanse my hair, and I would feel refreshed. I was very enthusiastic about trying out this new shampoo / conditioner, so I agreed, and we tried it. However, I don’t think we were prepared for the results once she removed the cap! My mum started to brush my hair and all of a sudden, we realised my hair colour had changed. It had always been black before. But after the transplant, somehow my hair color became brown! Also, my hair was wavy but now it was very straight and shiny. We were startled at the dramatic change. So, as well as a new liver, I got a new hair colour and a new hairstyle!
In Ward 8, there was a hospital teacher who would help the children with their learning. The lady used give out sheets and books for the children to practice math’s and English. The teacher would spend some time with each child in the hospital. Then my time eventually came and I’m going to be completely honest with you, it was NOT my cup of tea. I despised every time she came over, the reason being that she would want me to work or learn. I never liked to learn since I was a child. She was a nice person I just didn’t like to learn; you must know what that feels like.
So, when she came over, I would either:
- Dodge as she was approaching, or make an excuse to go the toilet
- Completely ignore and blank her, or
- I would tell her I do not want to work! I didn’t care back then as I thought it was irrelevant and not of high importance to me.
Whenever I needed to move anywhere, I would be in a wheelchair as my body was very weak, so it made moving quite difficult! If I wanted to stand up and walk there was always a machine that had stickers attached to me so wherever I went I had to take the machine with me! I used to go for ultrasounds and X ray scans to check how my liver was progressing and to check my health.
The day my family came to visit me in hospital was a very exciting one. I was overjoyed to see my cousins. I tried to get out of bed to greet them but realized that I was connected to many machines and I just had to stay put!
I got so many presents and cards from my family members. My teacher from school even sent me a Lego Batman t-shirt in the post! That was such a sweet gesture from my favourite teacher.
As I was getting stronger, the doctors allowed me permission to leave the hospital for an afternoon. So mum and I went to Ronald McDonald house where my dad used to stay. There was a games room, with a foosball table. I wanted to play but wasn’t sure if I could walk around for long. So, I asked my dad if we could go and play a game of football. And then he was like, yeah, sure. I had a fabulous time, I managed to walk around the table, it was the first time I played and I won!
During my stay at the hospital Radio Lollipop came to visit. They came and chatted with me about general things. There were many games and activities to participate in for all the children on the ward. There were many colourful beads and white cubes with letters written on. So, I decided to make a bracelet with my name on.
Another one of my memorable days was when we were allowed to make cakes at the hospital. We distributed the cakes amongst all the staff on Ward 8. When the consultants were making their ward round in the morning, I snuck in amongst other doctors and followed them on their ward round. Mum came looking for me and then took me back to my hospital bed. I was trying very hard to escape one way or another!
Finally, the day came and I was told “You can go home now, you are well enough to leave the hospital “. I was ecstatic, after six weeks, I could finally leave the hospital and go home. Freedom!
My parents packed all my belongings. We thanked the staff, left them a few gifts and said our goodbyes. To end on a high note, I walked out of the hospital feeling like a king and the happiest man in the world. I can’t thank God enough that he has granted me a second chance to live.
